Livedoid vasculopathy

Hi Tngbell, Yes the LV site is active. Tell us about your experience with LV . Zenk

My husband was only diagnosed in January but had been suffering with for 2 years. We had been going to a Wound Care Center who just debrided and tried differing wound dressings. Finally in December one of the doctors at the Wound Center said we really needed to see another vascular doc since the first one had found nothing wrong and she was convinced vascular issues were the root of the problem. In January we serendipitously encountered the very doctor she wanted us to see when he was admitted to the hospital with heart issues! He then referred us to derma pathologist who did a biopsy and diagnosed LV. Since then we have been desperately seeking help. Hyperbaric treatment was recommended in the research I found but Medicare will not pay for it unless you have diabetes. We are now going to UT Southwest in Dallas to be tested to see if Hyperbaric is even feasible for his body. They have said they might put him in a trial just to get it approved. We go Friday for the assessment. It is a horrible disease and I admire my husband for not giving up. He does his own wound care now with home health only coming twice a week.

Hi Tngbell, , I am glad your husband got a diagnosis after so much suffering. Getting a diagnosis is a great start because now you can concentrate on what works for this illness. Hyperbaric therapy would definitely help get oxygen to his wounds and help to heal them. If he could enroll in a trial or any way he could get HBO would help. I have medicare too so I know they do not pay for LV wounds. I take Xarelto 15 mg. per day to treat my LV. Blood thinning seems to be an important part of treating LV. Any way we can get oxygen to the blocked tiny vessels is key. Does he take blood thinners? Keep going to a wound center to be on the lookout for infection. I am able to get Mepelex bandages prescribed by the wound center to apply to the wounds. They stay in place and don't hurt to remove. They are life savers for me especially when wounds are over my ankle bones. They are foam padded and great. Does he have topical pain killer? Ask the wound center about it . I have used it over the years. Keep in touch, Zenk

It is sort of active. I look at it when it pops up, but don't know how
many others do. I have had LV for over 20 years.

Hi Shiela, I look at the LV posts when they happen too. Still chronic but taking Xarelto daily with the hope of preventing new ulcers. Zenk

We do Xarelto and it seems to have helped. No new ulcers would be a blessing!🙏

Hi Zenk, I hope the Xaralto works out for you! I had Amnioexcel Plus
tissue application last Nov-Dec. as part of some Drs. experiment in Wound
Care here. From Jan- june of this year I thought I was receiving the
Amnioexcell, but they gave me some other product made from sheep tissue
instead without telling me. My ulcer went from the size of a nickle to the
size of a 50 cent piece. I no longer go to Wound care, since I don't trust
them.

Hi Shiela, So sorry about your experience at wound care. What are you doing for treatment going forward? Keep in touch. Zenk

Hi Zink, I use Medihoney with calcium alginate as a wound dressing and reapply it every other day to the ulcer. I wash the ulcer with clear running water before applying the honey, putting a thin layer of honey on the ulcer and then covering with a nonstick, non latex containing pad. Since I am allergic to adhesives I wear compression stockings to hold the pad in place and to help keep pressure on my veins. Once a week I scrape dead cells and bits of honey out of the ulcer with a sterile platinum loop. This is painful, but then the ulcer is painful whenever I move. I change the pad once a day, sometimes more if I am active and the ulcer drains a lot.
Sheila

Hi Sheila, There is a product called EMLA - comes as a tube of cream - to use when you clean the ulcer out. Should be available OTC or to order from your local pharmacy. Put some on and cover it with cling film or OPSITE FLEXIFIX (Smith and Nephew) for at least an hour before you debride/clean out. It numbs the area and will wear off after two hours or so, so will start to hurt about then. I also take Paracetamol/codeine about 1.5 hours before a debriding session.
Another numbing cream which is less powerful is Lidocaine, used in the same way. I also use compression stocking to hold the pads in place, rather than plasters. The skin is so fragile.